In the December 3CTN newsletter, CancerCare Manitoba’s new Clinical Trial Focus Group was featured as a valuable, innovative way to engage patients’ ideas, concerns, and wishes in the site’s decision making about how to address any barriers for patients or caregivers, how to increase patient awareness of clinical trials, and how to make the language used in promotional material more appealing and easier to understand for patients. Since December, this group of six patients led by Clinical Trial Recruitment, Specialist Gina Garrett and attended by Clinical Trials Unit Manager, Kathryn Dyck and Senior Research Nurse, Barb Ammeter has had two meetings. These meetings took place on December 8, 2016, and February 2, 2017, with the third meeting planned for April 6, 2017. The Coordinating Centre contacted Kathryn Dyck to share some exciting news about the progress the group has made to date

Having a management background, and no previous experience from direct contact with the cancer patients, Kathryn was apprehensive about the group’s initial meeting. Her apprehension was related to being unsure how the work of the Clinical Trials Unit was regarded by the patients, and if their emotional state after participating in the clinical trials reflected any frustration with the existing processes. To Kathryn’s delight, her apprehension rapidly diminished by the end of the first meeting, once patients confirmed they were eager to contribute to the advancement of the activities of the Clinical Trials Unit. Realizing that the patients really wanted to be part of this group, and provide their feedback, Kathryn quickly envisioned the potential positive impact the “patient voice” could have on promoting clinical trials. During the first meeting the team assessed the degree of general information the patients had about the clinical trials, and what information they wished they had access to prior to going into their clinical trial treatments. After the patients indicated the clinical trial information included in the package given to all new patients coming to the center was minimal, the group agreed that additional information specific to clinical trials is needed.

The second group meeting was focused on obtaining patient feedback about the promotional materials such as a planned clinical trial poster to be placed in every clinic exam room, an informational pamphlet for new patients, and the clinical trials section of the CancerCare Manitoba website. Participants felt strongly that the “It Starts With Me” video, currently hidden away in the related links section of the website, should be more visible and brought to the forefront. Promotional materials were deemed to benefit from more photos featuring babies and younger children along with older people to emphasize that clinical trials efforts will benefit future generations.

For the third meeting in April, the group is planning to review and provide feedback on the patient displays that are being designed for International Clinical Trials Day in May. “Obtaining quotes from the patients based on their participation in the clinical trials and including ‘good news stories’ is important going forward,” Kathryn says, “because those are the stories that will resonate with other patients considering participation in the clinical trials”. Besides sending thank you letters to the patients at the conclusion of the sessions in April, Kathryn says that showing them the actual changes that were made as a result of their participation in the group will bring tangible and appreciable reward to them.

The 3CTN Coordinating Centre is excited, and looks forward to hearing more about this PPI project at CancerCare Manitoba, and the results of their third planned meeting in April. It is impressive to hear about the successes of a unique approach to PPI like this, and to hear about the way it has allowed rewarding interactions for all of the staff, and patient participants involved.

Welcoming a New Member to the Lay Representative Advisory Committee (January 2017)

3CTN is committed to including Patient and Public Involvement (PPI) in all aspects of the Network to enhance our work. To help guide the Network in the inclusion of PPI, the Lay Representative Advisory Committee (LRAC), made up of mostly lay representatives, was formed in the early days of the Coordinating Centre (CC), and has been an invaluable resource ever since.

Recently, a new lay representative was brought into the 3CTN fold through his work on a local Patient and Family Advisory Council. Robbie Stewart has now officially joined the LRAC, and we are delighted to have his input at our regular meetings. Robbie was excited to join 3CTN because “PPI is often an overlooked component in clinical trials, and this it is a great opportunity to drive improvement for all clinical trial stakeholders in Canada”.

When orienting a new lay representative in any capacity across the Network, it is important to help train the individual on the particular role they will be playing, as well as assigning them a “buddy” to help with the training. Erwin Wanderer, the Atlantic lay representative, kindly took on the role of mentor in Robbie’s case and this quickly helped Robbie find his footing in his new role. “Erwin took the time to walk me through the world of 3CTN and examples of what the LRAC has done with projects such as the ASK ME campaign,” says Robbie. Robbie was also grateful for the mentoring aspect because “the onboarding process allowed me to transition very easily from my work as a Patient and Family Experience Advisor to being involved with 3CTN”.

We are very pleased to have Robbie join the LRAC, and look forward to working with him in the coming months. Bringing Robbie onboard, through mentoring and training with 3CTN PPI Tools, is a great example of how to ensure a fruitful relationship with any new lay representatives brought into the Network. When your site is considering onboarding a new lay representative in the coming months, be sure to check out the tools and resources on the 3CTN PPI Webpage.

CancerCare Manitoba has recently started a new initiative at its centre to have stronger patient and public involvement (PPI) in the delivery of clinical trials. This initiative is in the form of a new clinical trials focus group of patients from the community. Gina Garrett, Clinical Trial Recruitment and Quality Facilitator at CancerCare Manitoba, says that the participants will provide their perspective through meetings on topics like new promotional materials for CancerCare Manitoba as well as improvements to existing practices. The group was formed after research nurses, oncologists and program managers were asked for names of patients who may be interested. These patients were contacted about joining the group, and if they were interested, provided consent to be sent an information package through the mail. CancerCare Manitoba provided information about different types of cancer trials as well as helpful resources for the participants to use so they could learn more before the first focus group meeting, which took place on December 8. Currently the focus group is providing input for a new patient pamphlet and clinic poster for CancerCare Manitoba. The 3CTN Coordinating Centre is excited that CancerCare Manitoba has begun this unique approach to PPI to assist with its local and Network projects. This is an excellent way to leverage the experiences of patients at a site to help improve awareness and delivery of clinical trials. Congratulations to CancerCare Manitoba on beginning this great new project.

Sunnybrook Health Sciences Centre has recently engaged two Lay Representatives (LR) to work with their trial team and boost Patient and Public Involvement (PPI) presence at the site. From the outset, Sunnybrook staff decided to search for community members with a range of backgrounds who could provide new perspectives to their team. Rebecca Gribble, Academic Trial Coordinator at Sunnybrook, said that they had lots of interest in the positions after advertising the role with the cancer centre and hospital volunteer groups. From these advertisements they were able to enlist the help of two new LRs and each of them were given a training package to prepare for their new roles. These training packages contained the 3CTN PPI guide, Ask Me Campaign training materials, as well as other external and hospital specific materials. “The 3CTN PPI Guide was invaluable” Rebecca said, “It was a great resource to refer to and build our PPI role based upon.” The goal for the Sunnybrook LRs is to provide input on several initiatives such as new patient materials, a redesign of the cancer care webpage, and participating in future on site trial awareness events. By recruiting volunteers with various experiences and professional backgrounds, Sunnybrook will expand and tailor future PPI goals based on what the individuals can contribute. One opportunity to participate in PPI activities has already occurred with International Clinical Trials Day in May where one of their new LRs was present to help run an interactive information booth. 3CTN is very pleased that Sunnybrook has started to engage LRs and recognized the value of PPI for Network projects. Their experience with these LR positions is an excellent example of how the 3CTN resources can be used to promote PPI at the Network sites. The 3CTN CC is hopeful that more sites in the Network will have LRs working within their sites soon!

Windsor Regional Hospital’s Exciting PPI ICTD Activities (June 2016)

On International Clinical Trials Day (ICTD), Windsor Regional Hospital organized an interactive public education booth, which included Patients and Public Involvement (PPI) by providing brochures from the Ask Me Campaign, participation in a knowledge testing quiz board about clinical trials, as well as leveraging the Ask Me Ambassador role to help answer the questions of prospective trial patients.

The Ask Me Ambassador is a great example of PPI, which entails a Lay Representative who can provide the patient perspective to the Ask Me Campaign. The staff at Windsor Regional Hospital chose to approach Nicole MacFarlane, breast cancer clinical trial participant, to fill this role for ICTD. Krista Naccarato, one of the event organizers, said that Nicole was chosen because she is a bright and motivated trial participant who enthusiastically expressed interest in contributing more to the cancer centre. Before participating, Nicole was given training about the Ask Me Campaign, using training slides available on the 3CTN website. During the ICTD events, Nicole had the opportunity to share her own clinical trial experiences, provide information about trial participation to new patients and generally generate interest about clinical trials. Krista said that, “It was a great experience which made Nicole feel empowered and helpful for being able to give the patient perspective.” Krista felt that having an Ask Me Ambassador made their booth more approachable for new patients, and they were able to really engage the other patients and the public. Some common questions such as, “Are Clinical Trials for everyone, or just certain patients?”, and “What trials do we have here, and how do I know if there’s one for me?” were successfully answered by the Ask Me Ambassador.

The Ask Me Ambassador role, as part of the Ask Me campaign, continues to be a great tool for sites to leverage PPI, and to raise awareness about clinical trials. Ask Me Ambassadors are an effective way to provide the patient perspective, and act as an approachable source of information for new patients. 3CTN wishes to congratulate the Windsor Regional Hospital staff for making great use of the Ask Me campaign tools.

Steering Committee for the Atlantic NRCC (May 2016)

The 3CTN Steering Committee for Atlantic Canada is a group of leaders helping coordinate 3CTN’s national goals and milestones within their provinces through their development and support of a sustainable, robust and progressive cancer clinical trial program for all Atlantic Canadians. PPI was incorporated early in the formation of the group as represented by their Lay Representative Erwin Wanderer. Wanderer stated he is excited to provide the patient voice in this initiative as a means to support evidence based cancer care for Atlantic Canadians. He added, “I was also motivated by a personal passion for oncology and inspired by the dedication of oncology staff” in the community.

So far, his PPI activity has involved working to solve recruitment challenges in academic trials and helping communicate the need to collaborate and maintain a strong portfolio of academic trials in Atlantic Canada. Wanderer is pleased to contribute to the objectives of 3CTN and to represent the patient and public interest. “I am happy to be involved as I can bring the patient voice to these discussions as all of 3CTN’s efforts are aimed at supporting evidence based cancer care for patients,” he said.

Lay Representatives like Wanderer are helping 3CTN to incorporate the needs and concerns of patients in cancer clinical trial operations across the country. 3CTN is committed to a robust future for the Canadian cancer trial environment and working with Lay Representatives like Erwin Wanderer will help ensure the patient’s voice is always included.

3CTN Continues to Support PPI Site-Level Activities (April 2016)

A key recommendation of the SAB’s 18 month review was for the 3CTN CC and the Lay Representative Advisory Committee (LRAC) to continue to support the roll out of PPI activities and roles across Network sites. To date, we have made the following tools and documents available to sites:

3CTN PPI Website, which includes:

PPI Tool Kit for Site Staff

PPI Tool Kit for Lay Representatives

PPI News – Updated monthly and has open call to sites to share their local PPI activities and events

3CTN Guide to PPI

Framework of Community Representation on Health Research Committees

Further to these tools, this month 3CTN is releasing the new “PPI Reference Tool” and the “Ask Me” Ambassador PPI role. Each of these new tools are intended to provide sites with concrete ways to incorporate PPI activities locally, especially for sites that might be struggling with way to adapt PPI to their local needs or goals.

The 3CTN CC and LRAC continue to increase the number of tools available to sites to implement PPI activities which will allow the Network to leverage the positive impact of PPI on recruitment and other clinical trial activities. With this month’s new tools Network sites can unlock the value of PPI locally and then share their local success stories with the 3CTN CC.

OPEN CALL FOR PPI NEWS Want to share a great PPI story with us? Have a great Lay Representative at your centre that we can feature? How has PPI impacted your clinical trial activities? The 3CTN Coordinating Centre wants to hear from you – send us your stories and we will feature them here for all Network stakeholders to see what great PPI related activities are happening at your centre. Send your PPI News ideas to: info3ctn.ca

The PPI Reference Tool: This new tool has been added to the PPI Toolkit for Sites and is a “Cole’s notes” walkthrough of all the steps involved in developing and implementing a PPI role on local institutional committees. This tool also acts as across reference guide between the “PPI Framework” and the 3CTN PPI Guide so that site staff can quickly navigate relevant document sections that may help with each step of implementing a PPI role.

The Ask Me Ambassador PPI Role: Sites that are currently in the process of their local “Ask Me” roll out may wish to add the Ask Me Ambassador role to the roll out plan. This PPI role is covered in detail as part of the new PPI Reference Tool and represents a great opportunity for sites to involve local patients that may wish to act as trial advocates or peer mentors for new patients that are considering trial participation.

Increase the number of adults and children enrolling in academic clinical trials;

Increase the number of centres offering academic clinical trials across the country;

Improve the efficiency and effectiveness of the management of clinical trials to complete trials in a timely manner

Streamline processes such as training of trial personnel, ethics review and specimen collection and storage;

Ensure sites are conducting studies that meet the priorities of Canadian patients;

Demonstrate the positive impact of this work on the Canadian health system.

The addition of PPI/PE can help make healthcare research accessible to general population;

To achieve a meaningful PPI interaction, there must be careful thought given to the role and its mandate. Ultimately the healthcare research industry has evolved past the point where “tokenistic” PPI/PE is adequate to serve the needs of the industry;

A key characteristic of a successful PPI interaction is the understanding that all voices and experiences bring value to the table in healthcare research planning and research priority setting.

Educate all 3CTN Stakeholders, Lay Representatives and scientific/site staff alike, about PPI and its potential benefits with the 3CTN framework;

Provide a “road map” for 3CTN PPI and thereby stimulate the incorporation of PPI throughout all levels of the Network;

Provide the necessary tools and training for Lay Representatives and site staff.